Does anyone else have MGUS?

@amyboylan1 It's natural to be apprehensive when we get a diagnosis like this. There are a lot of horror stories that are easy to find! Don't listen to them, is my best advice. As @pmm has said, each of us is an individual, and we will respond to this diagnosis in our own unique way.

I am one of the overachievers, morphing from MGUS to SMM [smoldering multiple myeloma] within a year of diagnosis, then advancing to active multiple myeloma within a year from that. But believe me, that is super highly unusual, even according to my seasoned medical team. For the highest percentage of us who start out with MGUS, that is where we remain. As you have read, maintaining a healthy lifestyle, exercising moderately, minimizing stress all will help overall. Advocate for yourself, become educated from reliable sources [International Myeloma Foundation myeloma.org is a wonderful site!] and stay positive.

We are here to support each other, and share our strengths.
Ginger

@amyboylan1
I think that response is perfectly normal. Keeping active and trying to minimize stress are good as well as healthy diet and exercise… All the things we should be doing anyway.
I’m sure some members have some things that work for them that they will add to that list.
Just make sure that your doctors stay on top of things. A little gentle nagging, asking questions and reminding them of your healthcare needs will go along way. Sometimes it’s the squeaky wheel.
I’m so glad that you found us and I hope that you will let me know how things are going.

I've had MGUS for 8 years so far. MGUS represents precancerous plasma cells, but only a 1%/year risk of them progressing to SMM or MM. No symptoms so there is no treatment other than monitoring bloodwork. I avoid stress, eat healthy, exercise, and take bioavailable curcumin (a supplement) just in case it helps with decreasing inflammation and TNF. It does hit one, being susceptible to MM or any other cancer, but it only morphs into MM for a small percentage of people. NIH and ResearchGate have a lot of peer-reviewed papers on MGUS (useful if you have insomnia, snooze worthy). A lot of us on this site have had MGUS for years. It can be scary, but also a chance to evaluate if one needs to make other changes or risks in life.

I was just diagnosed with it and am very anxious. I don’t fully understand all the parts of it.

Thank you so much for writing I appreciate it. I did have the biopsy but haven’t been checked for bone lesions. I have met with a hematologist oncologist. I felt a little rushed but she did go over my tests. I am so frightened about it turning into myeloma. I need to get my head out of the future and live each day. I already suffered from health anxiety and this is so hard for me. Your response helped.

@amyboylan1
Hello and welcome to the blood cancers discussion. MGUS is not cancer. That’s the good news. The chance of progression to blood cancer is also good news because it’s very small.
https://www.healthline.com/health/how-serious-is-mgus
We are each different, of course and we do have some overachievers in our group, but for most of us, we deal with MGUS as a watch and wait condition that does not require treatment.
Your hematologist/oncologist will do blood draws on a regular basis (I started out as quarterly and now every six months). You’ll also get regular scans of your bones to ensure there are no lesions. Some get a bone marrow biopsy to establish a baseline of how much of that M protein is in your blood marrow. This also helps a physician to differentiate between MGUS and smoldering multiple myeloma.
I was diagnosed with MGUS three years ago. When I was first diagnosed, I was very anxious about it. I read everything I could get my hands on and listened to the negativity of Dr. Google. It actually made me feel sick. My white count shot up and I just didn’t feel well at all. Once I talked to my physician and read more balanced information that he provided, eventually found Connect and talked to other MGUS patients, I was able to calm down.
Three years out I don’t think much about the diagnosis. I feel good and I’m active and optimistic that this condition will stay stable and see me through the next decade or so. At age 72 I tend to be a bit pragmatic about it.
I’ve learned a few things about dealing with the healthcare arena. It’s important that you have a physician that you have confidence in. MGUS is best treated by a hematologist/oncologist. I want a specialist who has lots of experience in treating multiple myeloma. I hope that it never gets to that point but the gains that have been made in the treatment of multiple myeloma over the last decade are pretty phenomenal and it is very treatable.
I also want to understand my diagnosis thoroughly and I want to partner with the physician and making decisions about my care. So finding the right doctor was very important for me. Quite honestly, I did not get my first choice, but that may have been serendipitous because I am very happy with my care team. I ask lots of questions and I want someone who is current on the recent research. my physician checks off all those boxes.
So when you say that you were recently diagnosed, have you had a chance to sit down and talk to your doctor? Do you know what your plan will be for your medical care? Would you mind sharing this with me?

I was just diagnosed with it and am gathering as much information as I can. It has come as a big shock and I’m experiencing a lot of anxiety about it progressing to blood cancer

I was just diagnosed with MGUS. Does anyone know if there is any treatment to help keep it progressing to myeloma. I was told no but I’ve read otherwise. Please help. This has come as a big shock.

@steveutnv we are all so different with different coexisting conditions. The question that you are asking, I believe, is what is the threshold for concern about your blood analysis? That is an excellent question for your hematologist/oncologist. At what level would the concern rise to a level where your physician would consider treatment? What might that treatment look like?
It is sometimes very challenging to get a doctor on the phone so you might try to get a telehealth appointment which he or she can charge for… That sometimes makes the time that they spend talking to patients more palatable.
Will you let me know how this goes for you?

He called me back and says he's watching it and my next adventure will probably be a bone marrow biopsy. I also have thrombocytopenia and the low platelet count concerns me more than MGUS.